- Last Updated: 08 December 2015 08 December 2015
It has been a cool, wet spring in New England! As summer approaches, we send warm wishes for your better health.
Especially for patients
If you have been ill for a while, please read the beautiful article by one of our long-time members. Live, learn, reset your GPS shares the story of a patient who, after 25 years with ME/CFS, is stopping to review her situation, perhaps forging a new path that will concentrate more on daily living than pursuing another illusive cure.
Are you unable to get your doctor to take your symptoms seriously? Read the story of Val and how she eventually was able to get a proper diagnosis, in "5 Things to Do When Symptoms Are Not All in Your Head."
Team Science to Patients, a project of ME/CFS Vereniging, Holland, has recently completed a series of very informative videos with Dr. Charles Shepherd, medical adviser to The ME Association in the U.K. Links to the videos, as well as to complete transcripts of the broadcasts and question/answer chats, can be found on the English page of the website of the ME/CFS Vereniging, Holland. If you would like to read the complete transcripts at your leisure, we have posted a PDF on our website which you can download and print.
New Social Security Disability Ruling. On April 3rd the Social Security Administration issued a new Ruling to be used in the evaluation of CFS/CFIDS/ME disability claims. The Ruling includes findings from both the 2003 Canadian Consensus Criteria and the 2011 International Consensus Criteria. Note that although updated diagnostic criteria are cited in the new ruling, a diagnosis alone is not enough to qualify for disability.
Under the Affordable Care Act changes have been made to Medicare and MassHealth programs. Several of the eligibility cut-offs have been raised, so disabled patients may be newly eligible for health insurance benefits.
Funds for Research
This year, in honor of May 12 International ME/CFS Awareness Day, Massachusetts CFIDS/ME & FM Association is again collecting money for research. You can participate even if you can't demonstrate!
Please pitch in to help if you can. Your contribution of even a small amount, when combined with gifts from others, will help to fund an important research project. We have chosen to put our combined contributions toward Dr. Lipkin's Microbe Discovery Project. He needs $1 million to do this study, and is asking the community to help.
This campaign ends on June 30. At that time, all donations received will be forwarded to Dr. Lipkin for his research.
Recent and upcoming events
Erica Verrillo reports on the San Francisco and Washington, DC, May 12th demonstrations. Erica writes, "The pictures taken by Cecelia were fabulous. It was inspiring to get together with people who were so enthusiastic and committed. Susan Kreutzer, Jane Pannell and I will follow up with a meeting at Dianne Feinstein's office."
Michael VanElzakker, a neuroscientist and researcher (and excellent teacher!) at Tufts University, discussed his paper, "Chronic fatigue syndrome from vagus nerve infection: A psychoneuroimmunological hypothesis," at a recent support group meeting. This exciting and intriguing idea could explain the root cause of the symptoms of CFS and why very similar symptom patterns seem to be triggered by different infections, and suggests possible treatments and directions for future research. Dr. vanElzakker presented his work in a poster at the recent IACFS/ME scientific conference. For those who were not present at the event, read the excellent interview by Cort Johnson with Dr. VanElzakker which explains the hypothesis in terms everyone can understand.
Our Association attended the Massachusetts Association of Public Health Nurses conference in Woburn MA on May 1, 2014. We distributed 115 Pediatric ME/CFS educational packets for school nurses at the conference (in Massachusetts, public health nurses often supervise the school nurses in their district). We will also be attending the School Health Institute in Hyannis, MA, in August, to continue our educational efforts with school nurses. Contact Us if you would like more information about these educational materials.
2014 IACFS/ME conference. Read one lay person's thoughts on the recent international conference in San Francisco. This article also contains links to summaries of the conference by noted researchers.
The 2014 Revised Edition of the IACFS/ME Primer for Clinical Practitioners was announced at the conference. It is downloadable from the IACFS/ME website. If you are a Massachusetts resident or health care provider, and wish to obtain multiple copies of the Primer, please Contact Us.
Chronic Fatigue Syndrome Advisory Committee. Please reserve Monday, June 16 and Tuesday, June 17 for the next CFSAC meeting, which will be in-person in Washington DC. Meeting information, including the agenda will be posted on the CFSAC website.
The meeting will be live-video streamed at http://www.hhs.gov/live. Listening-only via telephone will be available on both days. Call-in information will be posted on the CFSAC website prior to the meeting. Sign up for the CFSAC listserv to receive the latest updates about CFSAC.
Join the team!
Our association is actively recruiting volunteers to help us reach more patients, manage our use of technology, provide services to patients, help with our newsletter and website, and help arrange events. As many of our long-time volunteers are no longer able to carry the full load, we need new people to grow and sustain our Association. We provide orientation and support for volunteers. Join our team and help others while helping yourself.
If you (and your family and friends) shop at Amazon.com, Amazon's Smile program provides an easy way to contribute to a charity at the same time.
Here's how to participate; if you don't already have an Amazon account you will need to create one (you don't need to provide any credit card information):
Select the help option on smile.amazon.com: The Change your Charity will then show up under Your Account; Settings and the Payment option.
a. Go directly to http://smile.amazon.com => Sign In => Your account => Payments => Pricing & Promotions => Membership Programs => Amazonsmile => choose our charity – Massachusetts C F I D S (spaces between the letters) is enough to bring up our name. Then be sure to select and save. Confirm that the setting "took" by going to smile.amazon.com. Make sure you are logged in to your account. You should see "Supporting Massachusetts C F I D S Association" at the top of the screen.
b. On all your orders from Amazon, start your shopping from http://smile.amazon.com (easiest way is to create a bookmark for this URL). Before starting to shop, verify that "Supporting Massachusetts C F I D S Association" appears at the top of your screen.
c. As long as you start your shopping from smile.amazon.com, a portion of the price of the items you buy will be donated to Massachusetts CFIDS/ME & FM Association!
If you like receiving this free newsletter every month, please consider supporting our work by becoming a member.
Please pass this newsletter on to family, friends, and fellow patients! If you are receiving this copy from a friend, you can sign up to receive the newsletter yourself.